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shegothipslikecinderella
06-11-2009, 04:12 AM
Anyone find themselves feeling better after improving/changing their diet? What did you change? Are there any supplements you take? Why?

Sorry if this is too spur- I mean intrusive, I am just curious and want to know everything possible.

I've started eating an (mostly) organic vegetarian diet and quit drinking coffee, alcohol and quit junk food. All in the hopes of helping my kidneys out, since my lungs currently look "fine"... I think it's had a good effect, I had less blood and no(!) protein in my urine at last check.

Jack
06-11-2009, 05:41 AM
I've been vegetarian since the age of 15 and advised by various specialists over the years that this was good for someone with Wegener's. However, recently, I've had so much trouble with swallowing and my whole digestive process that I eat any junk just to get some calories inside me. I've now lost nearly half my peak body weight and need coffee to keep me going!

andrew
06-11-2009, 05:51 AM
Oh yeah! I changed my diet completely about four weeks ago. With a few exceptions, all I eat is:


Chicken
Tuna
Turkey
Kangaroo
vegetables
brown basmati rice
eggs
oats


I drink V8 vegetable juice, coffee and about 6 litres of water a day. I have vitamin C and fish oil tabs (when I remember them).

My basic rule is that if it doesn't look like what it says it is, I don't eat it. I feel a thousand percent better. After all that good food, anything 'bad' really disagrees with me. Cas in point: we had a morning tea for someone at work that was leaving. This was last Friday. I had a couple handfuls of Red Rock chips, maybe half a handful of twisties and some dip. I had gut cramps and the runs for two days. Unbelievable.

jola57
06-12-2009, 01:45 PM
I hear you Andrew, for me the runs come very quickly if something doesn't agree and i've had some embarrasing moments. Now I am careful with what I eat but there is no oney type of food, just the circumstance or just the way my body wants to react that day.

Doug
06-13-2009, 10:47 AM
I hear you Andrew, for me the runs come very quickly if something doesn't agree and i've had some embarrasing moments. Now I am careful with what I eat but there is no oney type of food, just the circumstance or just the way my body wants to react that day.

My body would reject food so fast, two times I ended up vomiting at the dinner table! Whew! I'm glad I didn't witness this happening to someone else: I would have vomited! Ha!

Doug
06-13-2009, 10:50 AM
Oh yeah! I changed my diet completely about four weeks ago. With a few exceptions, all I eat is:


Chicken
Tuna
Turkey
Kangaroo
vegetables
brown basmati rice
eggs
oats

I drink V8 vegetable juice, coffee and about 6 litres of water a day. I have vitamin C and fish oil tabs (when I remember them).

My basic rule is that if it doesn't look like what it says it is, I don't eat it. I feel a thousand percent better. After all that good food, anything 'bad' really disagrees with me. Cas in point: we had a morning tea for someone at work that was leaving. This was last Friday. I had a couple handfuls of Red Rock chips, maybe half a handful of twisties and some dip. I had gut cramps and the runs for two days. Unbelievable.

Yeah, yeah! We got you, mate. This is what keeps you hopping! :)

andrew
06-14-2009, 07:57 AM
My body would reject food so fast, two times I ended up vomiting at the dinner table! Whew! I'm glad I didn't witness this happening to someone else: I would have vomited! Ha!


HAAAAHAHAHAHA....good one!


Yeah, yeah! We got you, mate. This is what keeps you hopping! :)

The kangaroo is not only our national symbol but it is also an excellent source of protein, very low in fat and it's cheap! There are so many of them hopping around it's not too much of a chore to go out an blast one every week or two.

I've also had camel and emu but not as many of them wandering around.

Doug
06-14-2009, 11:53 AM
Reminds me of the Australian Minister (I'm not sure which department) who referred to koalas as nasty little animals that pee on you (or some such- it was outrageous). One has to be careful eating or commenting on national symbols! Besides, they stink of what they eat, possibly making them a reasonable substitute for Menthylptus drops were one to be caught alone in the wilderness, their habitat anyway, with a cold and no coughdrops. (Hold one under your nose....)

The bald eagle is a carrion eater in part, making it helpful in a biological sense (think vultures and bustards), yet, most people would like to think it subsists on salmon. I doubt they are tasty, bald eagles. Probably taste of what they eat. They can be harvested by people belonging to registered Amerindian tribes, for religious purposes, but only with Federal permits. No mention of what happens to the meat. The bones can be fashioned into whistles. Not to attract more eagles....

The same people eat dog, unseasoned, ceremonially, or at least the Lakota do. These are rangy, lean dogs that aren't pets so much as camp followers. Koreans skip the ceremony and dig in when they eat dog.

I guess I would have to equate kangeroo with bison, then. I presume the big hoppers are the one you can harvest to eat, not the wallaby-types, the little, endangered, cute ones.... Buffalo is lean, too. So is horse, so the French prepare it by inserting goose fat into the flesh. A huge amount of the horse flesh eaten in Europe comes from American wild horses that have out-bred the carrying capacity of their habitat. The alternative is to shoot them and leave the dead animals on the ground for carrion eaters.

Carrion eaters are gentle, shy birds (turkey vultures). Once, as part of an experiment to establish whether they used visual clues or smell to determine if something was dead, I played dead on the ground (in a cemetary- that's where many good birds are) to try to attract in a pod of turkey vultures gliding over my position. Smell wins: they were not interested in me. At the time, I was lean meat. You would be surprised how many ornithologists and birders (twitchers) have tried this experiment. In ornithological circles, it is spoken of, and no one laughs. Much. I've done other bizarre things to approach birds in their realm, but that's the worst case.

Rabbit is lean meat. I presume you'd prefer dingos eat the little bastards, though, and leave the lambkins alone. (Note: these are imported pests, not the cute ones you have as pets!!)

The first name for the University of Nebraska Cornhusker football team was the Bugeaters. Probably locust and grasshoppers as there were infestations of them in the early years of settlement.

I'm trying to get through with this thought, but it has captured my fancy. Help! :p

I will delete this after tomorrow, so don't refer to it in any postings!

coffeelover
06-15-2009, 04:35 AM
Not to "HOP" off the kangaroo meat suggestions. I have been eating more organic foods (grown from the local farmers of course!) and have been following to a great extent (in other words, not 100%) Dr. Weil's anti inflammatory diet and I have to say not only do I feel better, but my food Tastes so much better.
I have not given up the red meat completely ( I am a Minnesotan after all) and I of course, can't seem to give up the coffee. But, I have cut down.
Some examples of food I eat daily are mushrooms, beans, kale lettuce, crimson or shitake mushroom. I too, take fish oil daily and a muti vitamin along with the prescribed folic acid. Soy milk and soy products are my friend and I can honestly say this diet is not making me suffer. I actually enjoy my food and the time it takes for food preparation now.
My only problem is when I get oo busy to eat the "right" stuff and then I shove in all the old habits.
Being on prednisone I am not losing weight in leaps and bounds on this diet, but I definately feel better.
Just my two cents worth! Give it a try
Lisa

andrew
06-15-2009, 06:10 AM
Reminds me of the Australian Minister (I'm not sure which department) who referred to koalas as nasty little animals that pee on you (or some such- it was outrageous). One has to be careful eating or commenting on national symbols! Besides, they stink of what they eat, possibly making them a reasonable substitute for Menthylptus drops were one to be caught alone in the wilderness, their habitat anyway, with a cold and no coughdrops. (Hold one under your nose....)

The bald eagle is a carrion eater in part, making it helpful in a biological sense (think vultures and bustards), yet, most people would like to think it subsists on salmon. I doubt they are tasty, bald eagles. Probably taste of what they eat. They can be harvested by people belonging to registered Amerindian tribes, for religious purposes, but only with Federal permits. No mention of what happens to the meat. The bones can be fashioned into whistles. Not to attract more eagles....

The same people eat dog, unseasoned, ceremonially, or at least the Lakota do. These are rangy, lean dogs that aren't pets so much as camp followers. Koreans skip the ceremony and dig in when they eat dog.

I guess I would have to equate kangeroo with bison, then. I presume the big hoppers are the one you can harvest to eat, not the wallaby-types, the little, endangered, cute ones.... Buffalo is lean, too. So is horse, so the French prepare it by inserting goose fat into the flesh. A huge amount of the horse flesh eaten in Europe comes from American wild horses that have out-bred the carrying capacity of their habitat. The alternative is to shoot them and leave the dead animals on the ground for carrion eaters.

Carrion eaters are gentle, shy birds (turkey vultures). Once, as part of an experiment to establish whether they used visual clues or smell to determine is something was dead, I played dead on the ground (in a cemetary- that's where many good birds are) to try to attract in a pod of turkey vultures gliding over my position. Smell wins: they were not interested in me. At the time, I was lean meat. You would be surprised how many ornithologists and birders (twitchers) have tried this experiment. In ornithological circles, it is spoken of, and no one laughs. Much. I've done other bizarre things to approach birds in their realm, but that's the worst case.

Rabbit is lean meat. I presume you'd prefer dingos eat the little bastards, though, and leave the lambkins alone. (Note: these are imported pests, not the cute ones you have as pets!!)

The first name for the University of Nebraska Cornhusker football team was the Bugeaters. Probably locust and grasshoppers as there were infestations of them in the early years of settlement.

I'm trying to get through with this thought, but it has captured my fancy. Help! :p

I will delete this after tomorrow, so don't refer to it in any postings!

NOOOOOOO!!!!!! Don't delete it! It's good. :p

mucjud13
06-20-2009, 04:46 AM
Yes, Definitely! My Postive List Routine Past Few Months Has Been Eating All Anti Inflamatory Fruits And Vegetables Fresh And/or Frozen: Dark Green Leafy Veggs, Beans(all Kinds Except Boston Bakedd Because They Cause Gas!!!lol, Humus With Garlic And Wheat Pita Bread, A Whole Piece Of Fresh Pineapple Daily, Green Decafinated Tea, Blueberries, Rasberries, Strawberries,
Maliaki Mushrooms, Plenty Of Fluids, That New V/8 Infusion With Pomeogranate And/or Blueberry Vegetable/fruit Juice(i Make A Little Non Alcoholic Drink Out Of It With A Twist Of Lime Or Lemon And Crushed Ice, And A Whole Foods High Fiber Powder That You Put Into Anything(juice Is Best) It's From "garden Of Life," And Is Called Super Seed "beyond Fiber." It's Filled With Flax Seed And Everything Else You Can Think Of. It Costs About 23.00 For A Month's Supply, Easy To Use And No Mess, It Has Saved My Stomach And Bowels So Far(with All The Different Meds). It Also Suppresses Your Appetite Because It's So Nutrional, I Was Able To Cut A Meal Out With No Problem. When I Forget To To Take It I Get Nausea, Can't Relieve Myself Very Well And Just Can Tell That I Did Not Stay On My Routine With It. As Soon As I Get Back On It I Feel Fine And Everything Works As Suppose To. It Is Sold In Most Whole Foods Stores And Online, Oh Ya, I Struggled With Yogurt But Once I Was Able To Find The One I Like And Put My Own Adds To It I Have Not Had(guys Close Your Eyes/ears) Any Yeast Or Bladder Infections!!!! I Swear By It Now.
Godd Luck And Good Topic You Presented. Keep It Up. I Feel Like Now I Can Share Some Of My Positive Experiences Instead Of Always Sharing My Woes And Worries.
Judi

jola57
06-20-2009, 02:08 PM
:DThanks Judi for the list, I will try to be good and attempt to follow:D

mucjud13
06-20-2009, 02:15 PM
I'm glad I could help a little.
Good Night,
Judi

shegothipslikecinderella
06-21-2009, 01:05 AM
Good Topic You Presented. Keep It Up. I Feel Like Now I Can Share Some Of My Positive Experiences Instead Of Always Sharing My Woes And Worries.
Judi
Thanks! I will. Any lifestyle/diet tips you have are warmly welcomed... I am not used to all this medication, doctors and etc. I am used to healing myself holistically. It is taking a lot of adjustment.

Jack
06-21-2009, 01:28 AM
I am used to healing myself holistically.
You may have already found that it does not work too well with Wegener's. ;)
Unfortunatly, the drugs start out as your best friend, but can become your greatest enemy. :(

shegothipslikecinderella
06-21-2009, 01:43 AM
You may have already found that it does not work too well with Wegener's. ;)
Unfortunatly, the drugs start out as your best friend, but can become your greatest enemy. :(
Yeah- holistic doesn't work too well when it is your body that is attacking itself...:( I have gotten some pain and anxiety relief with EFT (http://www.emofree.com/). I've done it just a little, but it works.

If only I were fabulously rich to fund aggressive research on this. ;)

I am determined not to let drugs become my best friend- I have see what they've done to friends and family. I know what they are really like. We will be acquaintances, and that is all.

Jack
06-21-2009, 07:13 AM
Unfortunatly, the truth of the matter is that the only drugs found to keep Wegener's in check are highly toxic in the long term, but without them, mortality was near 100% :( And then there are the drugs you need to counteract the side effects of the first ones!:rolleyes:

elephant
02-03-2010, 10:19 AM
How many of you guys are on this anti-inflammatory diet? Has it kept you in remission? How has it changed you?

Sangye
02-03-2010, 01:02 PM
I follow some aspects of it. Never got me into remission, but it may contribute to the fact that my ESR and CRP are never high until I'm ready for the ICU. By this I mean that it probably controls my global inflammation as well as can be until the force of the Wegs overrides it.

Jack
02-03-2010, 06:37 PM
I have so many problems with eating that my diet consists of anything I can tolerate. I'm afraid that I get on best with sweet stuff which I seem to crave, but any calories I can take in are good.

berylj
02-04-2010, 02:56 AM
interested in your diets, my eating habits have been dreadful! my digestive system also( always in the loo!) this is due to pred i know, but im
now coming off them so now is right to improve my diet, what is the dr weir diet? is it available in the uk? i would appreciate any advice,
try anything if it helps, thanx berylj

elephant
02-04-2010, 03:19 AM
I am eating oatmeal, blueberries, oranges, banana's, apples, almonds,sweet potato's, dried cherries, wild salmon, pork, chicken, red meat twice a week ( not good), frozen veggies, light vanilla soy milk. I don't eat all these foods everyday. Yes, once in a while I will eat junk.
I will have to check the Dr weir diet?

moyan
02-04-2010, 03:34 AM
Hi, They corrected me to Dr Weil. With kidneyproblems, you not only have to watch salt but also potassium = double trouble :)

MCC
02-04-2010, 06:35 AM
I have been vegetarian since I was 11 and vegan for the past few years and have a reasonably healthy diet, but could certainly improve it. I probably eat too many carbs.

Things I have changed so far since having wegeners is eating less salt, I try to have a banana every day for potassium, having healthier snacks such as fruit and carrot sticks with salsa around, so when I get prednisone munchies I hopefully eat that instead of reaching for chocolate! I have also been drinking more herbal teas, such as dandelion.

I take a calcium supplement also to help the bone damage done and an enriched rice milk instead of soya all the time.

Oh, and I also got some apple cider vinegar after speaking to other patients in the hospital. Even the nurse said she took it, and it was worth trying. I'm not too convinced by it now after reading conflicting views. This is a 'pro' site: http://www.apple-cider-vinegar-benefits.com/

Edited to add: I have a friend who is very keen for me to try homoepathy (sp?) but I believe this will not help. What do you guys think?

Jack
02-04-2010, 07:16 AM
Things I have changed so far since having wegeners is eating less salt, I try to have a banana every day for potassium
I too am a lifelong vegetarian, but I have to make a point of adding a little salt to my cooking or I get cramps and I try to avoid bananas because my Potassium levels are always through the roof!

MCC
02-04-2010, 07:22 AM
I too am a lifelong vegetarian, but I have to make a point of adding a little salt to my cooking or I get cramps and I try to avoid bananas because my Potassium levels are always through the roof!

I used to be a bit of a salt fiend, adding lots after cooking, so I'm just trying not to do this now! I thought prednisone caused low potassium?

Jack
02-04-2010, 07:45 AM
I used to use no salt at all, not that it was a compulsion, I just got out of the habit. I began getting cramps in my feet and lower leg so started to add just a little to my diet and it seemed to cure it.
I have had a renal transplant and the high potassium goes with the reduced organ function. It was a big problem when I was on dialysis and required a special diet to keep the levels anywhere near safe. Unfortunately, one of the first symptoms is cardiac arrest!

Sangye
02-04-2010, 08:50 AM
Mandy, pred depletes magnesium. Higher doses that make you sweat a lot can also cause potassium loss.

Salt is good for the adrenal glands. Pred beats on them pretty bad. Just don't go crazy with it, and if you have kidney involvement follow your docs instructions to a tee.

elephant
02-04-2010, 09:40 AM
I have to be careful with my potassium, it gets low. Was on potassium pills for a couple of months because of high dose of prednisone.

onatreetop
02-04-2010, 01:41 PM
If its a fruit , vegetable or chicken I eat it. I limit the carbs and fatty sugary snacks that I crave. I do take the omega 3 , fish, sunflower and olive oils. Multi vit. Calcuim /d. The probiotics when I remember Have to drink them. Fiber when I remember between meds cant take with. And my favorite the milk shake for lunch at work. Still snacking on dry oatmeal too.

pberggren1
02-04-2010, 09:55 PM
I have found the best source of fiber is flax. It is a perfect balance of 50% insoluble and 50% soluble fiber. I grind it in a coffee grinder and mix with water and drink it.

coffeelover
02-09-2010, 08:50 AM
In addition to all these very good dietary habits, my rhuemy has requested that I take an Ortho Biotic daily. I found this is not available at ALL Health food stores, but I did find one that carried it. She thought it would help keep me from getting the thrush I continually get.
coffeelover

pberggren1
02-09-2010, 06:49 PM
What is an Ortho Biotic?

jola57
02-10-2010, 04:15 AM
I eat everything. There is no special diet I am on. I do however cook from scratch, very seldom do I use processed soups or veggies. I use regular amounts of slat to taste and sugar. I am a tea lover (10 cups a day - move over Lisa) and add milk and 1/2 teaspoon sugar. I am an addmitted pepsi/coke junkie and once in a while have a bottle or two. Most times its OK but once in a while having a bathroom close is a blessing. I take B6/12, follic acid, calcium, Actonel (either once a month or weekly). Main staple is home made chicken soup, potatoes, chicken, beef, pork, fish, eggs, carrots, greens. Most foods are boiled or poached. Some fried but in small quantities of oil.
I am now on 8mg pred (woopee) and 10mg methotrexate, and I can't seem to go lower than 90kg. How are you doing Lisa? My apetite is back for some reason even with the lower pred. I am back to snacking in the middle of the night, mostly on banana or apple but still snacking. As bad as it may sound if I do not eat breakfast I eat less during the day so my next strategy will be to forgo breaky by just having a tea.